Common pediatric neuromuscular conditions include cerebral palsy, myelomeningocele (spina bifida), muscular dystrophy, spinal muscular atrophy, hereditary motor sensory neuropathies, Friedrich ataxia, and Rett syndrome. This is a heterogeneous group of disorders with varying degrees of severity and involvement. Although some children and adolescents with these diagnoses can lead a relatively normal life and participate in normal activities, many are completely dependent on their care provider. Most patients lie somewhere between the two ends of this range and require varying amounts of care for their condition. The overall burden of these diagnoses is not limited to number of visits or admissions. These diagnoses also carry significant indirect costs including, but certainly not limited to, lost wages by the caregiver who is unable to go to work; out-of-pocket costs for necessities such as therapy, bracing, and wheelchairs; and the significant emotional impact on the family and care provider.

Healthcare Utilization

Neuromuscular conditions were diagnosed in 554,500 children and adolescent healthcare visits in 2013, of which 214,600 had a primary diagnosis of a neuromuscular condition. About 1 in 10 (11%) children and adolescents with any neuromuscular diagnoses were hospitalized (61,200), but fewer than 2% (4,100) with a primary neuromuscular diagnosis had a hospital discharge. (Reference Table 7C.1.1 PDF CSV and Table 7C.1.2 PDF CSV)

Males were slightly more likely to be hospitalized than females for both any neuromuscular diagnoses and as a primary diagnosis. Children ages 6 to 10 years had the highest rate of hospitalization, both with any diagnoses and as a primary diagnosis. Rates of hospitalization declined past 9 years old.

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Neuromuscular conditions as a primary diagnosis accounted for 0.8% of hospitalizations for any musculoskeletal condition diagnosis and only 0.1% of all hospitalizations for any healthcare condition. (Reference Table 7C.5 PDF CSV)

Cerebral palsy was diagnosed in two-thirds (65%) of hospital discharges. Spina bifida and muscular dystrophy represented 18% and 7% of discharges, respectively.

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Hospital Charges

Total charges averaged $75,700 for a mean 6.7-day stay when children and adolescents were hospitalized with a diagnosis of a neuromuscular condition along with other medical conditions. With a primary neuromuscular diagnosis, the stay was longer (7.2 days), and mean charges were higher at $92,000. Mean charges and length of stay were highest for the youngest patients, neonates. Total hospital charges for all primary neuromuscular discharges in 2013 were $377.2 million. (Reference Table 7C.5 PDF CSV)

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